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Feds Promote Alzheimer Disease Initiative — Experts Ask: Where is the Money?

Talan, Jamie

doi: 10.1097/01.NT.0000412583.87395.05
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An advisory council spearheading the national initiative on Alzheimer disease has met to begin focusing on priorities. But experts stress the need for budgetary support of their goals.

The goals of a national program to prevent and treat Alzheimer disease (AD) are lofty but experts who have worked with patients and their families and are on the frontline of the research say that without such a plan the incidence of the disease will increase under the weight of the baby boom generation.

“This is not the time to be timid about doing everything we can to prevent and treat this disease,” said Ronald C. Petersen, MD, PhD, the Cadieux Director of the Mayo Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging in Rochester, MN. Dr. Petersen is chair of the Advisory Council on Research, Care and Services for the National Alzheimer's Project Act (NAPA). Last year, Congress and the President signed NAPA, into law, charging the federal government with developing a national plan for AD. Health and Human Services (HHS) Secretary Kathleen Sebelius has oversight for NAPA.

The 25-member advisory council met earlier this month to work on the first draft of the plan, including the development of a framework on which to base the goals of the aggressive initiative. The members of the council include scientists, health care experts, patients and family members, all of whom have a unique perspective on what issues need addressing in reaching the goal to prevent and effectively treat AD. [For more on the law and a list of members of the NAPA Advisory Council, visit]

They have been pulling together an inventory of all federal, statewide, and local activities around research and care for AD and related dementias to determine the gaps and develop a coordinated plan to address present and future needs. Separate subcommittees will focus on research, clinical care and long-term care, and support. Roughly half of the council members work for the federal government.

There are five basic goals and a variety of strategies to reach those goals, said Dr. Petersen. “Stakeholders will be able to provide feedback on the recommendations,” he added. The advisory council is set to meet by conference call in March and create a second draft of the agenda by the next meeting in April. HHS Secretary Kathleen Sebulius must sign off on the agenda before it goes into action later in the year.

“We have been charged by the Secretary to be aggressive and bold in order to have an impact on Alzheimer's,” said Dr. Petersen. “This is a challenge in tough economic times but it is also an opportunity. This disease is hitting us in the face, and without a national plan, we will be unable to delay the onset or slow the progression of the disease. The challenge will be to say what it will take to significantly make an impact on this disease in a relatively short time frame.”

In a preliminary exercise, AD experts estimate that it would cost $2.3 billion a year to figure out how to effectively treat AD. By comparison, the federal government now spends less than a half a billion dollars a year on research. The Advisory Council subcommittee on research provided recommendations on a broad range of issues including an increase to around $2 billion per year. In comparison, the federal government now spends $6 billion on cancer, $4 billion on cardiovascular diseases, and $3 billion on HIV/AIDS. Those investments have had profound effects on those diseases.

Dr. Petersen said that the Secretary will have to go back to Congress and the Executive Branch with the recommendations and fight for more money to carry out the goals of the national initiative.

“You have to make the investment to figure out how to delay the onset and slow the progression of the disease,” said Dr. Petersen. “I have to be optimistic`. I hope that the individuals responsible for this law are willing to stand behind it. I suspect that the infusion of resources will be phased in over time.

“This may be the defining health care issue of the next several decades,” Dr. Petersen added. “I am impressed by the dedication of all those involved in this process.”

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The first goal is to assess the impact of the disease and develop effective treatments aimed at identifying the earliest stages of the disease and developing strategies to prevent or slow its course by 2020. Part of this goal is to translate the research findings into medical practice and public health programs. Other goals include providing people with high quality care by enhancing training in the AD workforce and expanding patient and family support programs. The national agenda also includes educating the public about dementia. Additionally, the federal government will put systems in place to evaluate the impact of the disease and track progress in treating it.

“Alzheimer's can't wait and families won't forget,” said Harry Johns, president and chief executive officer of the Alzheimer's Association and a member of the advisory council. “This process is about changing the course of Alzheimer's disease.”



William Thies, PhD, chief medical and scientific officer at the Alzheimer's Association, agrees. “There is a challenge in getting everyone's attention on the problem. We have a moment in time now that the country has an opportunity to focus on Alzheimer's and do what it takes to establish an intervention that can change the next 50 years for millions of people.”

By mid-century, the estimates are that there will be three times more people with AD than there are today. “Things are bad now and it will certainly get much worse if we don't do something soon,” said Dr. Thies. He added that what the field needs are big longitudinal studies much like the Framingham Study on cardiovascular disease that has followed thousands of people from many generations for more than 50 years. “It is a powerful tool to look at disease and understand risk factors,” Dr. Thies said.

At the same time, basic research continues to be critical. “One of the things we don't have in Alzheimer's is a clear pathway to a therapy that could change the course of the disease. Modern biology has led to targets for testing drugs. We have seen great success in cancer and heart disease. I have every faith that we will see the same kinds of success with Alzheimer's.”



At the January meeting, the advisory council research subcommittee also discussed the creation of an office (or an individual) with responsibility for implementation of the plan. They also touched on what it would take to improve clinical care and support services for patients and their families.

©2012 American Academy of Neurology